Earlier this week, a friend and I went to see Still Alice, a movie about a 50 year old linguistic professor diagnosed with early onset Alzheimer’s Disease. Alice, played by Julianne Moore, tries to manage her disease as long as she can, but eventually can’t be left alone. In one of many heartbreaking scenes, her husband and children sit at the kitchen table, trying to decide who can care for Alice while Alice sits almost unknowingly on the couch, unable to make decisions for herself any longer or even understand the decisions her family was trying to make.
As I sat, crying, for most of the end of this movie, I couldn’t help but think about some of the issues that Atul Gawande brought up in his most recent book, Being Mortal: Medicine and What Matters in the End, which I’d just finished reading.
Talking about death or debilitating illness is one of the most difficult conversations to have, but it may be one of the most important. In Being Mortal Gawande explores this challenging topic, looking at our modern experience of mortality and how modern medicine can and cannot address this time in our lives (emphasis mine):
You don’t have to spend much time with the elderly or those with terminal illness to see how often medicine failed the people it is supposed to help. The waning days of our lives are given over to treatments that addle our brains and sap our bodies for a sliver’s chance of benefit. They are spent in institutions – nursing homes and intensive care units – where regimented, anonymous routines cut us off from all the things that matter to us in life. Our reluctance to honestly examine the experience of aging and dying has increased the harm we inflict on people and denied them the basic comforts they most need. Lacking a coherent view of how people might live successfully all the way to their very end, we have allowed our fates to be controlled by the imperatives of medicine, technology and strangers.